Friday, February 27, 2009

We left for New Orleans last Friday and arrived back home on Wednesday afternoon. I meant to blog about the trip yesterday, but I was so behind with everything so the blog had to fall behind as well...

Anyway, we got to New Orleans on Friday and my husband and I went to the Zulu ball that night. We had so much fun. Dancing, partying, mingling with old friends. Babyface performed on stage and my husband and I danced the night away. We partied until 4am Saturday morning! WHOA! Where did the time go?? We headed back to my parents' house for a few hours of sleep before having to get up to help prepare for my mom's party that night. I ran some errands for her and then took a much needed nap with J. Then we got up to help set up for the party. I was the photographer for the event, and I found out that night why I do not and never will (again) photograph another event. My cousin was at the door telling the guests as they arrived that they needed to have their picture taken now if they wanted one to take home with them. That went well for the most part and everything was going smoothly, but obviously, a few people did not listen and didn't have their picture taken as they arrived. So many people showed up for the party, that I ended up printing pictures ALL NIGHT. I missed all but an hour of the party. My mom had a brass band to come and play towards the end of the party and as they walked out, a crowd of people followed the band out and I guess that was when some people noticed the backdrop and remembered that they hadn't had their pictures taken yet. The only problem with that was that I was printing up the last 3 pictures for the night. If they would have taken their pictures in the beginning I would have been done. I told the lady that she would have to give me a few minutes b/c all of the pictures were supposed to be taken in the beginning. She was drunk, so she was very disrespectful and was telling me how to do my job. She told me, "All you have to do is take the camera and snap a picture of us really quick" Oh really? It's that easy?? Hmmmm...I told her she would need to wait a few minutes before I could take her picture. She walked off mumbling something about me to her friends. I called them back after I printed the last few pictures and went to the restroom for the first time that night, and she came with 7 other drunk people who were yelling at me, stumbling and wasting drinks on my backdrop, and almost pulling the entire backdrop down. Let's just say it was very ugly. And I got very angry. The lady and I exchanged words and in the end my mom apologized for even asking me to do that for the party. The thing is, it would have went much smoother had everyone followed the directions provided. I was able to enjoy a slow dance with my hubby before the party ended and that was the highlight of my night.

Monday and Tuesday, we took J to some parades. He had a ball and he called all of the floats trains (of course) and he would yell "Heeeeyyyyyyyy!!!" LOL! Unfortunately I won't be able to share any pictures with you b/c they are gone. Someone walked away from my mom's party with my camera. All of my memories from the zulu ball with my husband and from the fun we had that weekend. All gone. I was able to replace the camera, but not the pictures. That hurts me to the core. How could someone be so rude?? We turned my mom's house upside down looking for it, so I know it's gone.

Monday night, we were on our way home from the Lundi Gras celebration when we got caught in some pretty bad traffic that was at a standstill. We were MILES away from my parents' house so we decided to turn around and have dinner with my brother and his fiance' hoping the traffic would be moving by the time we were done. As we were driving to my brother's house, my mom called. She was stuck in the same traffic and wanted to know if there was a detour that she could take to get home. My brother gave her directions and then went online to see what had happened to cause the traffic jam. He immediately found the story of a truck that crossed the median and ran head on into another truck. The truck caught on fire and the driver was burned beyond recognition. We drove home a few hours later and the next morning we met our family for the Mardi Gras parades. We enjoyed them and it was a beautiful day, After the parades we all just sat around talking and eating when my aunt got a phonecall that made everyone's jaw drop. The victim of the horrible accident the night before was our cousin. His funeral is tomorrow morning.

Wednesday, February 18, 2009

We had to be at the hospital this morning by 7:30 so my husband and I got dressed and woke J up and dressed him just before we headed out the door. We didn't want to chance him going to the kitchen and asking for milk, then having a tantrum when we didn't give him any. So I dressed him, gave him his prevacid (per Drs orders), and we hopped in the truck and headed to UMC. Once we arrived, we checked in at the front desk and they immediately sent us to the 6th floor where we were met by a check in nurse who immediately got J in his room and in a gown. He was nervous by everything happening so fast so he did his nervous humming, but I am so thankful that they did move so fast b/c he was hungry, but had no time to slow down and think about it. I expected the worst b/c breakfast is practically the ONLY meal I can get him to eat and he looks forward to it. Once we got in the room, we waited about 10 minutes for the Dr and anesthesiologist. During that 10 minutes, he started to grab at my purse and pretend to eat things from it, poor thing!

On the way to the hospital...Dressed in his little gownCheese!Pointing to all the "CHOO CHOO"s (school buses) passing by the hospital

The Dr came in and told us that one of us would have to go back with him while they put him to sleep. He is a total momma's boy, so we both agreed I should go back with him. Let me tell you, it was such a tough thing to watch. When he got to the procedure room, he was in his little bed (which he called a choo choo) and was immediately surrounded by 5 nurses doing things to distract him. He was so nervous, yet still distracted. Then the anesthesiologist came from behind and put the mask over his face. At first he didn't fight it but when he felt how weird it made him feel he started to cry, but by then I could tell his fight was weak and the nurse laid him back and within seconds, he was out =( I gave him a kiss and left the room. That is so hard for a mom to watch. My husband and I waited in his room for him. After about 15-20 minutes, we heard J crying. Isn't it funny how a mom just knows her baby's cries?? He was wailing and saying "Momma!!!" That broke my heart b/c as a mom, you want to run to their rescue, but I knew they were going to take him to recovery first and then let me come to see him. He cried for 5 minutes straght and then the Dr walked into the room and said she needed me to come in recovery now b/c he came out of the anesthesia screaming for me. When I walked into the room the anesthesiologist was holding him and she and another nurse were frantically trying to calm him. When I walked in, he reached for me and then relaxed in my arms. He calmed down enough to catch his breath, but then continued to scream as they checked his blood pressure and O2 levels. And he wanted to IV out. Poor baby! Nothing I could do or say could help him feel better at that point. He just wanted out. So I said, "Do you want to go home?" He said "Lets go" in the weakest, saddest voice, through his crying. Then he asked for Daddy. After they got his vitals, we headed back to the room and he went to his daddy.Not a happy camper after waking up :(

Oh, so I'm sure you are waiting on the findings!! The Dr saw two large stomach ulcers and the lining of his stomach is red and inflamed. She did some biopsies and said that she thinks those results will tell us more, so we have to wait until next week for that, but as of now, we think that the ulcers and irritated stomach are why he really won't eat. He was discharged an hour later (sans shoes b/c momma found out the hard way that his foot was sore from the IV) and we took him to Huddle House for a waffle. We were instructed to have him on a light diet for 24 hours, but the Dr agreed it's impossible to do with him since his diet is so limited, so she told us to give him what he will eat and if he throws it up then try pediasure for 24 hours. Well he ate his entire waffle with no problems afterwards.

One of my blog readers,D, asked a few questions about J's issues and seeing a GI for them, so I wanted to answer her questions here just in case anyone else is in the same boat. So many times serious issues can get dismissed and your child will just be labeled as a picky eater, b/c let's face it, toddlers do become picky eaters! However, I am constantly learning that mother's intuition is a gift from God and we should always listen to it and make our children's Drs listen as well. And if they won't listen, find one that will. For the record, J has had 3 pediatricians so far and the 3rd on is a charm. So with that said, let me answer D's question! J was diagnosed with a dairy intolerance at 2 weeks old and with reflux at 3 weeks old, so he's always had GI issues but we didn't take him to see a GI until he was 5 months old and was still puking up more than half of his formula. At first the GI told us that he was just a "happy spitter", but I knew that it was not good for him to be throwing up more than half of each feeding and still throwing up 3 hours after a feeding. Then at 6 months old, he had blood in his stool, so they switched his formula to Alimentum and we eliminated soy from his diet. He stopped spitting up completely, so the GI no longer needed to see him. He never was a big eater when he started solids. In fact, I remember Dr. B (the GI that did his procedure this morning) look at me with disapproval when I told her that all he would eat were nuggets and sweet potatoe fries. But at 13 months old, it was hard to determine if he was going through a phase or not, so I tried to introduce other foods and he did accept some variety, but he gagged on most them and downright refused others. At 18 months old, he was hospitalized for a bad case of stomatitis. It was after that, that his eating just came to a halt. He refused everything but french toast,waffles, nuggets, fries, pb&j, and beenie weenie. Now he only eats french toast (thought not as much as usual, waffles, fries, and pb&j on occassion. So as you can see, his diet intake got smaller. A few weeks ago J's pediatrician thought he had giardia, so they referred him to the GI for further testing. While asking about his BMs she inquired about his diet and I told her and she was VERY concerned b/c he has had the same awful diet since he was 13 months old. She said, in fact, it's not even a diet. So she immediately ordered to have all of these tests done and will place him in feeding therapy once we know for sure what's causing his issues. So basically, J has always had a GI history, but I had to request a referral to a GI on my own. If you feel that there is something more than just picky eating going on, I say fight until you get the action you know is needed to make things easier for you and your family.

Tuesday, February 17, 2009

1. I am really trying to get back to adding pictures to this blog! I promise! Things have just been so hectic around here lately.2. J has been using his words so much lately, and he's developing quite a silly personality.3. I feel like he's ready to get back into his playgroups and library storytime, but I'm afraid that once we start it all again, he will go backwards.4. His eating has not gotten any better. In fact, it's gotten worse. French toast, fries, and PBJ. Nothing else. Last night I tried baby food and he gagged on it and threw it up.5. Tomorrow is his EGD. I'm so worried about him going under anesthesia, but I am also ready for some answers. 6. If the Dr doesn't find scarring, narrowing, or anything suspicious during the EGD, he will start feeding therapy asap.7. If she does find something wrong, then we will know that my poor boy has been in pain and that's why he won't eat. I pray that it's something that can be fixed in feeding therapy and no more surgery!8. We are going to New Orleans for a week on Friday!9. Zulu Ball, my mom's bday party, Mardi Gras!!10. Hopefully once I get back I can get back into the swing of things and add some recent pictures to the blog!

Friday, February 13, 2009

This was taken back in June of 2008 when he was hospitalized for stomatitis. He is scheduled to have his EGD with biopsy done on Wednesday at UMC. We are hoping for some answers to get him healthier soon! Have a great weekend everyone!

Monday, February 9, 2009

Finally some answers about the GI issues and what was considered "picky eating" by other professionals.

J had his GI appt today to follow up on the foul smelling, sandy stool. Dr. B walked into the room and sat down and said "Okay, so fill me in on what's been going on." I love that about her. She is prepared to listen. We should be able to say the same about all MDs but unfortunately we can't. I told her about the stool being sent of by his pedi b/c it was very foul smelling and that they suspected giardia. However, the test came back negative so they referred him to the GI. She told me that giardia is recurrent and will not always show in every stool sample. One sample can be completely negative and the next can be FILLED with the giardia bacteria, so she wanted to just go ahead and treat him (like his pedi wanted to do). She then asked me about his diet and I told her about his eating habits and that he only eats bread, fries, processed nuggets, and yogurt on a daily basis. I also told her that I have been told for months now that it's just a phase. She disagreed. She said that even with a phase or picky eating the child will still get a variety of foods within a month, but Jayden's variety doesn't change and it all seems like its texture specific. She also went back into his chart and saw where he had a hard time starting solids as an infant, so he has always had a feeding issue. While I was talking to her, Jayden signed "eat" and I pulled out a granola bar for him and started giving him pieces. Before he asked to eat he had been running around the room like crazy, but to eat the pieces I was giving him, he sat down and stared into space while chewing. So the Dr just watched him chew. She said that he was trying way too hard to chew the little pieces I was giving him and she could tell that he wasn't able to chew it enough to swallow it without pain. I always knew this was an issue. So she looked at me, almost apologetic, and told me that he is going to need a battery of tests done and then she wants to put him in feeding therapy. Honestly I wanted to just jump up and hug her b/c this has been going on for far too long and I was tired of being made to feel as if I am the crazy person. She said that there is a chance that his feeding issues could be behavioral, and feeding therapy would help with that, but before she puts in in FT she wants to make sure that it's not painful for him to eat before we force him to do so. From watching him, she thinks there may be pain associated with feeding. So tomorrow morning he goes in for a barium swallow. Then after that they will schedule an EGD with biopsy. I feel so uneasy about my baby going under anesthesia, but at the same time, I am so ready for them to figure out what's bothering him. I'm also upset that it has been ignored for so long. Her main concern is that he may have scarring and narrowing of the esophagus, which would require extensive care and multiple surgeries. We are going to take this one day at a time. I walked out of the clinic so relieved that someone finally listened to my concerns and that my son is finally going to get some help and relief. Keep him in your prayers please and I will surely keep you all posted!

Sunday, February 8, 2009

I find it so amazing how one little word can lower frustrations levels dramatically! As you know, we've been teaching J sign language. One word that we've been trying to teach him for a while now is "help" b/c he usually whines or screams and has a tantrum when he can't figure something out on his own and needs a little help. So we would say "help" and show him the sign. The sign is a bit complicated for a 2 yr old (hit closed fist into open hand) so he has been trying to say the word instead and does a single hand clap! lol. Instead of the word sounding like help, though, it sounded more like "Hell". So we have been putting strong emphasis on the "p" and now he is saying "How". I really don't think he can make the "p" sound just yet. How is so much better than hell though ;) So now, instead of whining when he can't figure something out, he runs to us, claps his hands together and says "HOW!!" LOL! Love it :)

Monday, February 2, 2009

Sunday, we finally decided to graduate J from his crib to a toddler bed! I was afraid that it would stress him out b/c he loves his crib and has a hard time falling asleep anywhere but in the crib. So I was thinking it was a security issue. Not to mention that I was not ready to risk giving up his 3 hour naps. But we decided to try it out and leave the rails for the crib out of the attic until we knew for sure if the toddler bed would work. So he ate lunch while I set up his new big boy bed. When he came in his room he was so excited and immediately noticed his new bed! I asked him "Do you like your big boy bed?" He jumped in it and said "Bee Ball Bee!!" We let him play in it for a while and then it was time for his first nap in his bed. I was so worried about him falling out of the bed while asleep, so I pushed the bed rail to the very end of the bed. He took his entire 3 hour nap =) He woke up from his nap and still wanted to sit in his bed so we removed the rail and let him play in it some more. Then bedtime came and I let him climb in bed by himself. I got in next to him and he covered me up and gave me a kiss and I read him 3 stories. This is the first time in his life that he sat still for three stories straight! He was so happy. After I read his stories, I climbed out of his bed and put up his rail, but left the gap for him to get out when he woke up in the morning. I fully expected this to cause an issue with him refusing to go to bed. He held on to his Thomas book and he stayed in bed all night. This morning I heard him wake up and I watched him (on the monitor) climb out of bed and turn off his sound machine. Then he played with his toys like a big boy! I was so proud of him. I thought for sure that we had gotten lucky though, but today I told him it was naptime and he grabbed his blanket and climbed in bed. I turned on the sound machine and he looked at me and pulled his blanket back. I had to get in bed and read him a story. Then he went to sleep, another 3 hour nap people! After his nap he woke up and played in bed, but didn't get out until I opened his bedroom door. He also went down so easy tonight. I read him another story in bed and I can see that becoming an every night thing, so I hope I don't gain anymore weight!! I am surprised that he actually stays in bed. He is such a good boy and is enjoying his new bed.

Oh and FYI since it's been pointed out to me alot on that picture...the outlets are certainly covered with clear outlet covers. We don't use the white ones b/c J can pull them off.

Welcome to our blog!

Thank you for visiting our blog! We are happy to share a little bit of our lives with you. After years of battling infertility, we adopted our son, Jayden, at birth and 5 years later I gave birth to our newest addition, Elias. God is so good!!

This blog is a mixture of personal thoughts, daily battles and triumphs with Jayden's health, and about our experiences as a family of 4. So sit back and enjoy our crazy life!